Involving service users in Births and their outcomes: a retrospective birth cohort data linkage study analysing daily, weekly and yearly cycles and their implications for the NHS

Abstract

IntroductionWe report on service user participation in ‘Births and their Outcomes’, a population-based, retrospective, birth cohort, data linkage study to analyse the daily, weekly and yearly cycles of births and their implications for the NHS. Although Public Involvement and Engagement (PI&E), also referred to here as Patient and Public Involvement (PPI), has a long history in maternity services, PI&E in maternity data linkage studies is new. We have reported using the GRIPP2 short form. ObjectivesWe aimed to involve and engage a wide range of maternity service users and their representatives to ensure that our use of routinely collected maternity and birth records was acceptable and that our research analyses using linked data were relevant to their expressed safety and quality of care needs. MethodsA three-tiered approach to PPI was used. Having both PPI co-investigators and PPI members of the Study Advisory Group ensured service user involvement was part of the strategic development of the project. A larger constituency of maternity service users was engaged through four workshops held throughout England. ResultsTwo co-investigators with experience of PPI in maternity research were involved from design stage to dissemination. Four PPI study advisors contributed service user perspectives. Engagement workshops attracted around 100 attendees, recruited largely from Maternity Services Liaison Committees and a community engagement group. They supported use of the data, believing the study had potential to improve safety and quality of maternity services. They contributed their experiences and concerns which will assist with interpretation of the analyses. ConclusionUse of PPI ‘knowledge intermediaries’ successfully bridged the gap between data intensive research and lived experience, but more inclusivity in involvement and engagement is required. The concerns and questions of service users provide social legitimacy and a relevance framework for researchers carrying out analyses.

Addressing inequities in maternal health among women living in communities of social disadvantage and ethnic diversity

“…We consider Patient and Public Involvement and Engagement (PPIE) central to ARC maternal health research [ 16 ] and we have begun our programme of work by engaging women involved in local communities in South London. Their experiences and insights into maternal and perinatal mental health can help to make our research more relevant to the needs and priorities of the local population.…”

Neonatal mortality in NHS maternity units by timing and mode of birth: a retrospective linked cohort study

“…The PI&E strategy was based on the same three-tier model. 30 For this particular project our PI&E lead presented previous findings and our new plans at a national event for MVP lay members in order to collect the views of a wider constituency of parents, and also invited expressions of interest in joining a new PI&E advisory group. Three people (white British, black British and Asian British) joined the group.…”

“…Public involvement and engagement (PI&E) have been at the core of the work undertaken to develop and analyse the City Birth Cohort using a documented ‘three-tier’ approach 30. Two service user representatives were involved in the earlier National Institute for Health Research-funded research from the outset as co-applicants.…”

“…In the Economic and Social Research Council-funded research described here, service representatives from Maternity Voices Partnerships (MVPs) became involved. The PI&E strategy was based on the same three-tier model 30. For this particular project our PI&E lead presented previous findings and our new plans at a national event for MVP lay members in order to collect the views of a wider constituency of parents, and also invited expressions of interest in joining a new PI&E advisory group.…”

Sensitive, Challenging, and Difficult Topics: Experiences and Practical Considerations for Qualitative Researchers

“…Most research undertaken in the health, human, educational, social, and psychological sciences has a requirement for Patient and Public Involvement and Engagement [PPIE] from the early planning stages, sometimes through to the stages of disseminating research (see also Newburn et al, 2020). The engagement and involvement of persons with lived experience or relevant charities is especially important when undertaking research into a sensitive, difficult, or challenging subject matter.…”